Starting Chemo March 2015

Italychick

Katy, I think what you say is true about the "proof", but many women, you and me included, have all cancer removed before undergoing chemo. So I guess maybe I was looking at it from my point of view. But I still don't understand the white blood cell issue. If that is really the current belief, that white blood cells help tumors regrow, then why give us neulasta? That would seem counterproductive. I had a blood test done, on my own, that said I had a 50% chance my body would resist chemo. My blood was tested against all known chemo agents and it showed my best response was to taxotere or adriamycin, same percentage, 83% effectiveness. That's all I had to go on.

But I'm still not understanding the white blood cell issue the article talks about.

ksusan

Congratulations, Whitney!

Re the article, I wouldn't lose sleep over a little newspaper blurb that's poorly written. You can always look up the article in the journal referenced.

slothabouttown

Whitney congratulations that is great news! Could we get a link to your blog? I'd love to read it, is this essay there too?

ksusan

Okay, I assume this is the abstract: http://cancerres.aacrjournals.org/content/early/20...

I can't access the article from home. At a quick look, it seem to be an in vitro rather than in vivo study (lab study, not live animal/human study).

Jackbirdie

T- you were very smart to have that test done on your own, independently.

I didn't know such things were possible. I know much more today than I did when treatment decisions were made. I would love to have known if the chemo I underwent was effective.. Now I just wait and hope.

As far as the white cell thing, I agree with KSusan, I'd read the study, if there is one. Likely as not, there is no study. How would they study that? I was told green tea, probiotics, and a number of supplements could protect tumor cells too. I think it is speculation. It makes sense to somebody. So they print it and scare the crap out of people. I guess if you wanted to take the argument further, you could argue they give you Neulasta because without it you could die sooner than if the cancer came back, so they treat the more immediate problem.

I can see the abstract perfectly well on my tablet but it is far too technical for me to grasp it. At all.

wpmoon

thanks ladies!

Blog is here: http://whitneyandcancer.blogspot.com though working on a move, but that hasn't happened yet.

I haven't posted what I submitted on the blog yet. I was waiting to see what happened. My friend Alicia edited it beautifully for me. I'll post it here in the morning.

Katy: I hadn't thought of writing a book until a friend suggested it the other day. Maybe this is a start. The reading is at a book store.. And if not, at least it's therapeutic to write about it.

jumbledbamboo

Hi ladies. I have finished my TCHP chemo and am having herceptin infusions. I am having my Ooph on the 9th. Any advice on preparation? It seems to be pretty straight forward but I wonder.

molly1976

Congratulations, Whitney!

Trvler

Having trouble keeping up.

Congratulations, Whitney!

Leighrh

Question that might be dumb.... so I will ask here before MO... LOL Now may brain is def not running on all cylinders but can someone explain survivor #'s to me.... like all these #'s that are spit out//5%,10%. 15% of recuurance after all these treatments.... all of these # are 5yr survivor rates right??? So what happens after 5 years?? Ppl just start dying off??LOL or the risk of it coming back increases/decreases? Seems like every thing I read is based on 5 yrs......... Im gonna need more that 5 years after all this crap...LOL. I apologize if this is a question that is readily known info.... my chemo brain is just not making sense of it.... SpecialK, I am sure you are the master of info.... can you explain so that dummys(me) can understand?? LOL

eheinrich

Whitney!!!!! That's so exciting

Jackbirdie

Leigh- I hope for all of our sakes Special does beam herself in. It is confusing. As far as I understand, different studies and trials run differently.

Some are "look-back" trials, and if there is sufficient data, as in the very large and deep in years Danish data base, they can give 10 year survival rates. For example if you have surgery and Tamoxifen. Older chemo regimens. I asked for printouts of the early prognosticative reports from my MO, and some clearly stated 10 years. And there are two kinds of those. Ten year survival, and ten year alive and disease free or NED as we are learning to call it. They are different. You might be surviving, but be stage IV.

Other trials are ongoing, and release their data as soon after five years as they can write their findings up, have them peer-reviewed, etc etc, published.

Sometimes, they update those stats again at ten years. Sometimes they don't, and I expect this has to do with the original design of the study, funding, and patient availability.

So with newer treatments, like 10 years on an AI vs 5, simply don't exist. Too new, no study has ever been designed and carried out, or published yet for a myriad of reasons.

SoI always ask three things:

1) can I get a print out of that? (And study later when I'm calm and not panicked)

2) are we talking 5 or 10 years right now?

3) are we talking survival/morbidity rates, or disease free rates.

I think you will know a lot more if you can get them to answer your questions this way. But it's not all their fault. Sometimes 10 yr info is available, sometimes not.

Hope that helps a little until Special comes to the rescue.

SueH58

Whitney - I must have missed a chapter in this board. Congratulations! I would love to read the essay or your blog. Can you repost it?

On a lighter note, my husband made me a stuffed Amish chicken Wednesday night. It was great. Last night I made chicken tettrazini. I was bummed cuz I only had cream of asparagus soup, but it turned out OK, though I couldn't taste or find much of the chicken in it. So tihs morning I open the fridge and there in front of me is the 2 cups of chicken cubes. No wonder I couldn't taste it!

And speaking of chicken, are you ER+ ladies going with all estrogen-free meat going forward. The lovely Amish chicken cost me $12! It's wierd, I look at everything now like "oh those berries are full of pesticides," "that beef is full of estrogen," "that pepperoni is full of nitrates." Kind of a drag.

ksusan

We've eaten hormone-free meat for a few years now. Getting more rigorous on the pesticides and dairy feed, though. I figure going to almost any restaurant gets us unwanted stuff, so anything we do at home reduces our risk.

SueH58

Theresa, I didn't know they could do a blood test to determine effectiveness of chemo/type of chemo? Why aren't we made aware of that test? Even if not covered by insurance (which you would think it would be), we may elect (like you) to pay for it ourselves. Arghhhh

SueH58

ksusan - are you ER+? Do you shop at a healthfood store for your meats? While chicken is marked in most grocery stores, beef is not...

Jackbirdie

I look at all food (and water, make- up, sunscreen) suspiscously too. My friend brought me some fresh blueberries yesterday. I gave them the stink-eye until she explained shed picked them herself at a certified organic AND local farm. I should be going cartwheels. I still wonder.....

ksusan

Yes, I'm ER+. I'm fortunate to have access to hormone-free, local beef. I wish I had better quality pork, because that's my "I don't feel like eating" sandwich meat. Once I'm on Tamoxifen, I'll go back to soy a few times a week for my protein. I'd eat more lentils and beans, but my partner has an intolerance and unless we cook a lot of separate meals, it's not feasible. We have some grains in common, but I have diabetes so I have to watch out for high-carbohydrate meals. Fortunately, we consider this an amusing challenge, not an obstacle.

Jackbirdie

Ksusan- as you once said, you are easily amused. I'm glad. I had not considered that now thatI'm on Tamoxifen I could re-introduce soy into my diet....hmmmm. Do you have a source for that discussion, or did you just think it through? Soy gets the stink-eye too right now. I used to love it.

slothabouttown

jumbledbamboo, I don't think anyone on this thread has gone through that procedure, but I imagine if you search the BCO site with the keyword "oopherectomy" you'll find some helpful info. Good luck with your surgery and recovery!

ksusan

Katy, my MO and ND both said I could have a serving a day even now, but I'd rather wait until that receptor is blocked.

SpecialK

You can purchase meat with no added hormones but because it is animal protein it will never be hormone free - just like humans. You might want to focus on finding sources of protein that are more naturally raised and pay attention to what they are fed - because ultimately, you are eating what they ate. I try to stick with grass fed beef, pasture raised chicken and their eggs, organic pork, and wild-caught seafood.

The reason most of us don't have independent chemo sensitivity testing done is that it is not yet standard of care - here is some info on the different types, I am most familiar with Caris and Foundation One. I am not clear on the FDA's stand on this type of testing at this point - often insurance will not cover tests that are not FDA approved (and some that are - mine did not cover my Mammaprint, which is FDA approved on the grounds that it is an "experimental" test) Much like tumor markers - some docs might do this testing, others won't. This is an insurance website but was pretty comprehensive:

https://www.anthem.com/medicalpolicies/policies/mp...

The article mentioned in above posts indicates that WBC may encourage tumors - but as ksusan said, this has only been shown in mice, not humans - there have been no human trials to date, so this is still an idea, not a fact supported by study data. The reason Neulasta is used during certain types of chemo is that low WBC makes you subject to an opportune infection, which can compromise you or even kill you.

As far as neoadjuvent versus adjuvant chemo goes, jackbirdie mentioned that the benefit is multi-pronged - see if the drugs work, shrink the mass for better margins or surgical choice/outcome, if pCR is achieved there is data to support a better long term DFS (disease free survival) or OS (overall survival) but whether that is the case seems to be a truly individual thing - much like positive nodes - I have seen those with many nodes have DFS and those with a few progress - no rhyme or reason. Chemo is a systemic treatment - surgery is meant to remove the cancer and chemo and hormone treatment (if applicable) are meant to mop up and prevent recurrence. Chemo is not meant to remove a tumor in the breast because that can be removed surgically - if you have neoadjuvent chemo and happen to have pCR that is good, but not the real purpose of that type of treatment. This is different from when chemo is used to shrink or remove a tumor in an inoperable location, or in the case of leukemia where surgery is not applicable.

The best source of survival data is SEER, linked below for breast cancer. Note that this data lags behind time wise, so newer treatment modalities - like Perjeta - will not have influence because it has not been used long enough to collect information.

http://seer.cancer.gov/statfacts/html/breast.html

You can also use calculators like PREDICT and Cancermath, but Her2+ should use PREDICT because Cancermath doesn't take targeted therapies into consideration. These tools have survival calculations past 5 years. With Cancermath I like to use the pictogram to display the results. Note that with PREDICT enter your tumor size in mm - this is a British tool - just multiply your cm size by 10 and enter it in. I have linked both below. Your oncologist can also provide you with data specific to you by using AdjuventOnline, but it can only be accessed by physicians.

http://www.predict.nhs.uk/predict.html

http://www.lifemath.net/cancer/breastcancer/therap...

SueH58

Whitney, you are an OUTSTANDING writer! I am reading through your blog like a chapter book! Reading just a few posts has confirmed what I already knew about you---you are a smart, beautiful woman with so much to offer the world. When I went out on leave, one of my co-workers said to me, "be kind to yourself. Be your best friend." I find that theme resonating in your writing. We're nice to friends, pets, friends' pets (hi Tutti!), etc. But we have little experience being kind to ourselves. If nothing else, that idea is something I've practiced and will continue to.

Hugs!!!

ninjamary

LIFE MATH - fuck you. Hence the reason I don't google my stuff anymore. It's all doom and gloom. I was shocked when I went to a survivor meeting at my hospital and women were 16 years out.

Italychick

ninjamary exactly. Either we survive or we don't. I got a 94% survival rate after 5 years, but really, that number is meaningless. I tend to think survival is based on each persons individual body chemistry (chemo resistance, etc.) and also, how well the surgeon did their job. When I told my surgeon WIDE margins, she listened to me and took out a huge chunk, and I got amazing margins, smallest one was .5 cm, but that was the margin between my tumor and the skin surface so there was nothing left to take. Even with that, I only have a small crease on the side of my breast, not even noticeable in clothes, and hardly noticeable without a bra.

My rant for the day is, seems Abraxane creates way less side effects, but it isn't a first line chemo due to cost. It seems to do as good of a job as taxotere or taxol, but it isn't used first. I'm reading about another woman's reactions on taxol and how they finally switched her to Abraxane. Yeah, because it certainly is cheaper for an insurance company to hospitalize women than use a gentler chemo (sarcasm intended). It is gentler because of the adjuvants mixed in with the chemo agent. Anyway, too late now, already did the taxotere, but I wish I had known up front. Why don't doctors tell you these things?

And seriously, doesn't it make sense to do chemo sensitivity testing since chemo is so expensive? I spent $3,000 out of pocket for my chemo sensitivity test, but I'm glad I did since I had no findable cancer cells after surgery, and I will never know if the chemo worked. At least it gave me a confidence level that maybe it is 83% effective, but even that is unknown.

Whitney, congratulations! I look forward to reading your essay!

Carrie37

Katy, my surgery is August 20.

ninjamary

My survivor rate was 69.5% but that's the doom and gloom with triple negative. Internet - you are going to most likely die within 5 years, tough luck with that. Yes the site gave me a 70% chance which I'll take, but it didn't take into consideration my lymph nodes, treatment...etc.... It's too simplistic, which I was expecting and it's not first site I've entered my information on. Most likely won't be the last. Depends on the day.

I stopped my lasix pills, which was downright stupid (it's that kind of day) and the cankles are back. Good times. Lesson learned.

SueH58

Theresa, will you be starting rads soon?

Italychick

I can't do rads, found out I was radiated as a child. I posted that several months back. RO said he is okay with me not doing it, and I have an appointment with breast surgeon next week to see whether I wait and monitor, or explore mastectomy route. Right now I am of the mindset to wait and monitor, but I have to see what surgeon says. I have no easy answer

SueH58

That's right Theresa. I do remember. Sorry to bring it up again.